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Thursday, March 22, 2012

Feeling Blessed

So I had the opportunity to go to a mini march for CF today! It was at my sisters daycare, The Nurturing Place in Springfield, MO. They were raising money for Cystic Fibrosis by taking donations and then all the little kids in the daycare (about 80 today) were going to march around the parking lot to raise money. I had been excited about this for a long time! Last night however, I was up all night long with a bunch of sinus drainage causing the back of my throat to itch/tickle and making me cough nonstop. I managed to get about 2 hours of combined sleepage time! lol! I was very close to calling and cancelling on the mini march because of feeling so crummy. (This past year and definitely past few months have been havoc for my health, constantly fighting colds and viruses, Missouri "weather changes" have been crazy this year) I knew the people at the daycare had been working very hard to make this happen and were expecting me, and come on, who can let down 80 little kids?! Not me!

So I made my trek down this morning, and of course it was raining. I say of course because I had this little feeling that a certain someone living under the crust of the earth :) didn't want me to go today because of the fit I had coughing last night. So I assumed there would be some other "road blocks" to having everything go perfectly. Other than the weather though, everything did go perfect! All the little kids were great! They were so excited to go on their march! Most little kids get shy when they meet someone new, but not these guys! They warmed up to me right away and were giving out high fives and hugs like crazy! The march went phenomenal! The staff at The Nurturing Place were awesome! They had the place all decorated in purple and all the little kids and staff were wearing purple! It was CF'd out at the daycare!!! They all made special mini march hats to wear and had streamers and stuff to wave while we marched!

Overall they raised $400 for the CF foundation and are going to continue raising through the end of the week! I have to admit, getting to spend the morning with these guys and seeing them march around with their streamers, hats, purple gear, and little CF mini march stickers on touched my heart! I know most of them were too young to really understand what CF is or does. To them it was walking around waving stuff and wearing the hats they made, but to me it was incredible! It meant so much to get to be there and see all the hard work that the people at The Nurturing Place put into this march! So THANK YOU to everyone who had anything to do with the mini march for CF today!

On the way home, I was feeling very greatful for the opportunity to participate in the march as well as very honored. The daycare chose to raise the money for CF because of me. From what I understand they have done fundraisers in the past for other organizations, but when they found out, through my sister who works there, that I have CF they chose to raise the money for CF this year! They invited me down for it and treated me like an honored guest! :) Every time I look at a child I see the miracle of God's creation in them. Today I got to see around 80 little miracles marching their hearts out for CF! It was a blessing and one of those "reality" moments when you realize just how great He is and how blessed you are!

UPDATE!! I talked to my sister yesterday and the final amount of money raised for the CF Foundation was $500.55!! That's pretty amazing for a little daycare in Springfield, MO! If pre-schoolers and a handful of kindergarten and first graders can do that what can we do? AND... They are already talking about other fundraisers they can do throughout the year or the CF Foundation! I'm amazed at their generosity!

Monday, March 12, 2012

CF Talk

What up ladies and gents! So I'm not sure if I mentioned it yet in a previous post (pretty sure not) but in October of 2011 I was asked to give a presentation to my department about what it is like to live with CF. I work at Barnes-Jewish as a respiratory therapist. So I gave it and it went over really really well! I gave it 3 times in 1 day actually so all the shifts could hear it. When the director of our department heard it, she said she wanted me to be submitted to give the talk on a state and national level and work on getting it published! Total shock to me!

Well I got approved on the state level!!! On April 27th I will be giving my presentation to RT's from all over the state, some from out of state, in the Lake of the Ozarks at the Lodge of the Four Seasons Resort!! The conference is called the MSRC (Missouri State Respiratory Care) Conference. I also found out that Monica can go with me! Whoo-hoo!! So she's gonna chill at the resort, shop, swim do whatever while I attend some other presentations and earn some CEU's and then we'll have our evenings together! I'm really excited about the opportunity and can't wait to see where this thing goes from here! I also signed myself up for a 5K down there! Monica and I have been running 5 miles once a week so I think I should be moderately prepared as a 5K is only 3.1 miles. My goal is to run the entire thing, no breaks! Right now I wouldn't make it, but hopefully by then I will! Who wants to sign up for one with me?!?! Any takers?!

Friday, March 9, 2012

What's to come!!

What's up guys! I'm posting again!! I can just sense everyone's excitement! Monica said the blog is really boring right now and I need to post something again to keep everyone's interest. Let me just say we have been overwhelmed by the success of this thing so far! The number of people checking it out and commenting on facebook are crazy! Very cool indeed!

I figured I'd just give an idea of what's to come in the future, things I'm looking forward to posting someday. First, I want to get my treatment schedule on here. What meds I take and how often and what kinds of therapy I do and how often. Let me clarify one thing while I'm at it too, I am not in any way shape or form looking for sympathy or pity. Anything I post is to help educate people and to connect with the CF community. I am not one for pity parties. I don't like to whine or listen to whining, so please don't confuse anything I/we post on here as anything other than what it is. Just a post to educate, inform, and for people to enjoy! We want this blog to be as fun and crazy as we are!! WHOO-HOO!!!

I'd also like to post my PFT history. PFT's are Pulmonary Function Tests. These test measure the volume of air you can move in and out of your lungs. The main one we are concerned with as CFer's is the FEV1. This measures how much air you can forcefully blow out in 1 second. It directly correlates with how "blocked up" your lungs are with mucous. Over time with CF the lungs fill up more and more and the number drops. So, it's a way to track the progression of the disease and tell when it's time for a "tune-up" which is another thing I'd like to cover someday. Routine hospital admissions are called "tune-ups" by us CFer's.

Monica and I at some point will be going through IVF (in vitro fertilization), which we will post on here for all to follow our journey through! Which hopefully will result in some babies! :) So there's a lot to come here on A Walk in the Parks with 65 Roses!

Is there anything anyone would like to see posted?! Leave a comment and let us know!

Thursday, March 8, 2012

Hey Guys!!

Hi everyone! Welcome to our blog, A Walk in the Parks with 65 Roses! Monica and I are very excited about being able to blog about our journey through this life! We'll be posting updates about what's going on with us, thoughts, questions, some may have to do with Cystic Fibrosis (CF) some may not. If you're wondering what the 65 Roses part means, click here to find out! We think it's going to be awesome having this blog and can't wait to share it with everyone! Hope you enjoy it! :)

                                                                                            Love, Jeremy and Monica Parks

What is Cystic Fibrosis?

I thought it would be fitting to define Cystic Fibrosis. Many have never heard of it before and have no idea what it is, except a disease that makes people get sick and cough. There's so many definitions out there, this is the one that I thought described it best.

Cystic Fibrosis – A hereditary disorder affecting the exocrine glands. It causes the production of abnormally thick mucus, leading to the blockage of the pancreatic ducts, intestines, reproductive tracts and bronchi often resulting in respiratory infection.

CF, as it is commonly referred to for short, is a genetic disease. You can't "catch" CF from someone else. It requires that both parents be carriers of the disease, and then there's a 25% chance that each child born will have "active" Cystic Fibrosis. There's 50% chance that each child born will be a carrier, and therefore a 25% chance that the child will not get either of the "defective" genes. Carriers of the disease have zero symptoms and are not affected at all by the disease. Click here to go to the Cystic Fibrosis Foundation (CFF) website to learn more about CF.

Alright, so I just gave you the textbook definition of Cystic Fibrosis. That definition usually means nothing to us CFer's (people with Cystic Fibrosis). What CF means to us is how it affects us everyday. It's different for every person. There currently have been over 1500 mutations discovered for CF. Each mutation will have variations of severity for the affected organs. Even those with the same CF genes will present differently regarding symptoms. Each person has 2 CF genes, one from mom and one from dad. Even those CFer's with the same 2 genes won't have the same symptoms. One may have a more severe "case" of CF. So basically CF affects each of us differently and will progress differently.

Which leads me to the next point, that CF is a progressively worsening disease. Cystic Fibrosis is a terminal illness. This means there is no cure and the disease eventually progresses until the affected person loses their life. It's a fact that many try to ignore. They look at me or other CFer's and think "Oh they look healthy they'll be fine." Unfortunately this isn't true, CF is terminal and has been shown to take it's greatest toll on the body throughout the 20's. Therapies to treat CF are coming a long way to help prevent symptoms, and slow the progression of the disease. The greatest of these is a drug that was just released called Kalydeco. It's a HUGE step in the treatment of CF! Very exciting!

That's all I'll get into for now! It seems like a lot to digest if you're just reading about all of this for the first time. My advice is to educate yourself! So many have never heard of the disease, and it still takes the lives of children and people all over the world! I want to help spread the word and raise awareness, so help me do that by educating yourself!